pT3b Prostate Cancer - where are you now post-op?

Everybody is different when it comes to prostate cancer. Somebody with the same T3b Could have very different results than you will have. One person could live decades more than you or you could outlive them.

Even with all the questions you ask, your results could be completely different.

Reply to "Jeffmarc",

Thanks for your reply. I am curious: what is your background...your current profession? Are you in fact a urologist or other physician or physician assistant involved with prostate cancer? You are a frequent presence and contributor here that I know we all appreciate, so it makes me wonder. Thanks for your replies.

I am 77 and retired. I spent 50 years in Computers, programming for 25 years and the last 25 running a consulting business with almost 100 businesses.

In 2010 I was 62 and a biopsy showed Gleason 3+4. Had surgery, after surgery they told me it was a 4+3. It was only stage two. 3.5 Years later it came back and I had radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1 year later went on Zytiga, which kept my PSA down for 2 1/2 years., After some AFIB Issues I switched over to Nubeqa, The last 20 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped. I did not find out I was BRCA2 Until four years ago.

I spent the last four years attending weekly online, advanced prostate cancer meetings with ancan.org. They have people In those meetings that have spent 15 years helping people with how to manage treatment for advanced prostate cancer. Over that time I’ve heard from hundreds of people about what is going on with their treatment and recommendations about the best path forward. A real education. Besides that I’ve been attending biweekly prostate cancer meetings with CSC, Monthly meetings with UCSF and bimonthly meetings with the reluctant brotherhood. I’ve been on Mayo for a little over a year, Posting and learning new things all the time.

I am constantly reading studies and articles about different treatments.

I know that my cancer is going to come back. It’s just a matter of when. Eventually Nubeqa Will fail or the BRCA2 Will cause too many genetic problems. I’m always searching for answers to where I go next, And that leads me constantly to where other people go next.

Jeff are all of those organizations something anyone can join or do you have to be at a certain stage of cancer? Also even though your first recurrence was not that long ago, it was a long time in prostate cancer development. What happened when you recurred? Were you on q3 PSA? What do you think would be different or you would do differently if you were at that point again today?

What I wrote, specifies exactly what was done when I recurred. The first time was about 12 years ago and I had radiation.. The second time I went on Lupron. The third time was when Lupron failed and I went on Zytiga. The 4th time I had a metastasis on my spine and had radiation and switched to Nubeqa.

Go to ancan.org and sign up. They have an active surveillance group, They have a low and intermediate group and they have an advanced group which is for those that have had a reoccurrence Or a very aggressive case to start with. You can attend any meeting you like. They have a schedule of when the meetings occur. You have to install GOTO meeting To attend those meetings. They also have a men speaking freely meeting twice a month, where people can talk about everything but treatment, If you have issues that affect your life that you want to talk to other people that have cancer About it is the place to go. There’s a veterans group even that helps veterans get better care.

Go to http://thereluctantbrotherhood.org/ and you can sign up with them. They have a meeting for all prostate cancer patients and another one for advanced prostate cancer patients.

The CSC meetings Require you be in California. Same with the UCSF meetings.

I forgot to mention that I attend a number of seminars given by PCRI, who’s meetings you can view on YouTube. There is incredible amount of information in those meetings. If you search YouTube, you will find more conferences that cover prostate cancer and different issues with prostate cancer.

If I had been diagnosed in the last three or four years, I Would’ve found out sooner that I have BRCA2 and I might’ve gone on a PARP inhibitor. If I had been diagnosed in the last couple of years, I might’ve started on ARSI Sooner since they now find that it can delay, castrate resistance.

That’s something I didn’t discuss. I became castrate resistant six years ago. The median survival after you become castrate resistant is two years. It would’ve been nice to delay that. Because my case was not really aggressive at first, it enabled me to be alive after six years. Besides that I can still Start a PARP Inhibitor if my PSA starts rising, Hopefully it will give me a couple more years. I then have chemo and Pluvicto As options after that. New discoveries are coming out pretty regularly, Hopefully one will come out soon that helps people that have had their PSA rise even though they are on ADT plus an ARSI.

Thanks for the reply. With all of those recurrences and new strategies, the good news is that you've survived now 15 years following diagnosis and RP. That is great and encouraging news. I know there were lots of inconveniences, frustrations, and times of hopelessness, but you made it through - and that is great.
I guess the news for me is that it will always be "on my shoulder" as I live my life..."tapping me" to say "I'm baaack".
I had some initial genetic screening that stated that I have no cancer genes in me of any kind, but I am also waiting on results of my after-the-fact Decipher test that tests for those 22 prostate-specific genes and mutations. Half of them were not in my more basic genetic screening. I hope my Decipher score is good. Other than Type II Diabetes, I have not had to have a constant awareness and worry about anything health-related in my life. This will be very trying...always thinking and wondering "when will it come back?" Makes me wonder why I even bothered have the RP surgery if it comes back. It just proves that the DaVinci Robotic RP system is not the "be-all" surgically perfect method that my urologist claimed. My dad lived to 99 years 10 months WITH prostate cancer...had it for 15-20 years. My grandfather lived to 96 years old WITH prostate cancer. He had it for about 15 years, maybe longer. Neither had the RP surgery. They had problems, but at least they were continent and had a sex life as long as they wanted it.

I think your advice and knowledge has been marvelous. Several of you that contribute daily are inspiring.

It really is great to have other people that can answer the questions and help with a variety of information. I can’t always cover everything and I really depend on others to help, Especially when I miss something that should’ve been mentioned.

I know that for me after about five years, and having been treated and it worked, I just stopped panicking about what’s going to happen. My father died of prostate cancer, but he lived 88. His father had an enlarged prostate and lived to 98. My brother got it at 75, no BRCA2 so it took longer. Having a father with prostate cancer just about doubles your chance of getting it. I got the BRCA2 from my mother.

I’ve been getting PSA test monthly for eight years, I do like to see the results, but I don’t get worked up waiting for the answer. It seems one reaches a point where the anxiety reduces a lot,

Also am t3b. Was t3a before my surgury but biopsy said seminal vesicle area tissue was benign. On ADT now for at least 3 years. Radiation in about 2-3 weeks from now.